Sylvia Mackey: Breaking the Silence of Dementia

Madison, Wisconsin - As April ushers in springtime showers, it also brings Minority Health Month and advocate Sylvia Mackey, wife of NFL Hall of Fame tight end John Mackey of the Baltimore Colts. Years after her husband’s death, Sylvia continues her mission of tackling dementia and Alzheimer’s disease.

Sylvia will be in Milwaukee on April 8 and Racine on April 9 to tell her story of taking care of John, the trials of a caregiver, and how much more work needs to be done to battle dementia and Alzheimer’s disease.

“This is a great opportunity for people to come out and get educated about dementia and to start losing the fear that surrounds this disease,” said Gina Green-Harris, director of the Milwaukee outreach program and services of the Wisconsin Alzheimer’s Institute (WAI), part of the University of Wisconsin School of Medicine and Public Health. The WAI is hosting both of Mackey’s talks.

When he was 65, John was finally diagnosed with Frontotemporal dementia (FTD). He passed away at the age of 69 in 2011. As a caregiver, Sylvia became an advocate for John and others with dementia, as well as a renowned speaker on FTD and its impact on patients and their families. She even successfully petitioned the NFL to start a program eventually known as “88 Plan,” a fund that pays up to $88,000 in medical costs to the families of retired players with dementia.

Statistics show that members of the African-American community are twice as likely to have such a disease and not be diagnosed, and Hispanic communities are one and a half times as likely not to be diagnosed. Communities of color are being affected by these diseases in larger volumes, and there is a higher mortality rate because “we aren’t getting diagnosed,” said Green-Harris.

“We want everyone to understand that dementia and Alzheimer’s disease affects more community members than we want to believe,” said Green-Harris. “She can help us begin to have healthier dialogs about these diseases and start to bring dementia and Alzheimer’s out of the proverbial closet.”

The event on Tues., April 8, in Milwaukee will be held at the Italian Conference Center at 631 E. Chicago Street; breakfast and networking begin at 8:30 a.m., and the program begins at 9:30 a.m. Wednesday’s event in Racine will be held at the Racine Marriott on 7111 Washington Avenue (Hwy 20); breakfast and networking begin at 9a.m., and the program begins at 9:30 a.m. Complimentary parking is available at both locations.

Both events are free and open to the public, but registration is required. To register, contact Nia Norris at ncnorris@wisc.edu or (414) 219-5159.

The event is sponsored by the Wisconsin Alzheimer’s Institute; the Helen Bader Foundation; the Milwaukee County Department of Aging; the Alzheimer’s Association; Brain, Brawn and Body; and WJMR Jammin’ 98.3 FM.